Patient Advocates Discuss Harnessing the Untapped Health Data Horde

A veritable tsunami of data has washed over the healthcare industry in the last few years. With the proliferation of biomedical research projects that have reached such a scale as to earn them the moniker “megaproject” in a recent NPR article on the Partnering for Cures meeting that took place in New York, NY on November 15, we are collecting massive amounts of data that present a challenge to the scientists who would make sense of and harness that data.

Some of these “megaprojects” are familiar names to many, such as the Cancer Moonshot and the Precision Medicine Initiative, while others such as the International Human Cell Atlas Initiative might be new to some. But what they all have in common is the massive amounts of data they have collected—and continue to amass. In addition, the number of data repositories themselves also continues to proliferate, according to the article.

Despite all this data being collected, medical researchers have not yet taken on the task of analyzing and leveraging the information for specific outcomes or care. “As a country, I think we’re investing close to zero analyzing any of that data,” said Dr. Atul Butte, leader of the Institute for Computational Health Sciences at the University of California, San Francisco, according to the NPR article.

Factoring in the multi-billion-dollar push for healthcare providers to make the switch to electronic health records, the full picture of just how vast our country-wide data repositories has become starts to come into focus. Lack of interoperability further adds to the challenge, as disparate electronic health record systems are unable to exchange or share the data they individually harbor. Lack of standards for in what form certain data are recorded and kept can make accessing them on a mass scale difficult or even impossible.

“In a world when anything is possible because you have so much data, how do you figure out who has done the math right?” said Robert Califf, Food and Drug Administration commissioner, according to NPR. “He said the only way to know for sure is to take ideas gleaned from the big datasets and then try them out in people. That means persuading patients to participate in studies,” the article said.